Moon face...

[Gladys911]

I've been steadily reducing prednisolone for GCA since September last year and had not really worried about the weight issue as I was more concerned about my sight and other side effects. However I am now down to 4 mg a day and am appalled by my moon face and what looks like a buoyancy aid around my middle. I hate dieting especially when I am coping with other issues, but I eat healthily (though I do like a glass or two of red wine). My question is, does the weight gain/ distribution sort itself out when I come off pred, and, if so, how long does it take?

[SnazzyD]

It does go eventually. I didn’t put on weight but my fat went on a hike to those areas as it doesn’t for the majority. Muscle loss from my limbs just accentuated it. Weight gain does make a difference but it isn’t the whole story. I can’t say I could chart the speed of it going as it was a slow creep. I did find that the effects of Pred didn’t fully go away for some months after stopping Pred and my last year was on 1mg or less. We are all different though.

I will say two things, though I have no idea if you what your weight situation is. Weight isn’t the only concern, but rather blood sugars. Eating healthily doesn’t cut it with Pred as carbohydrates are much more of an issue. One can tick along with a diabetic range of blood sugar just from eating a normal diet. Eventually, some become diabetic due to the long term insulin highs. The risk is less as you go down, but the horse may have already bolted.

[Gladys911 in reply to SnazzyD]

Thanks for this - I imagined it would be a slow process. I don't have a problem with sugars as my intake is very low, and it is definitely the distribution of fat that is bothering me, my weight hasn't increased significantly but it is a bit depressing looking in the mirror (perhaps a trivial concern). As I have made good progress with pred so far I should be down to 1 mg by September I was just wondering how long (if ever) it may take to get back to normal, or perhaps I am being too optimistic.

[SnazzyD in reply to Gladys911]

It is trivial but it isn’t as scores of people will tell you. Getting over any major condition demands patience sadly.

You are on a low dose now and in a very short time for GCA so I will say don’t be hasty because you are fed up with the whole thing. The need for normality and our old self can beckons like a siren. Keep a good eye out for symptoms and signs of slow adrenal function. You may be one of the lucky ones, but don’t be tempted to blow it by going too fast because in terms of numbers, 4 seems to close to 0. 4mg could still be working hard for you.

[DorsetLady PMRGCAuk volunteer in reply to Gladys911]

. As I have made good progress with pred so far I should be down to 1 mg by September I was just wondering how long (if ever) it may take to get back to normal, or perhaps I am being too optimistic.

Maybe don’t bank on being down to 1mg by Sept especially as you were only diagnosed in Sept 2023. Lot of water under the bridge between now and then.

You will get back to normal, but it doesn’t happen overnight as you take the last steroid… your adrenals for one thing can take up to a year to be full functioning…

Me - 8 years in remission from GCA and back to normal fairly quickly…

[sidra1968 in reply to Gladys911]

I have quite literally stopped looking in the mirror..my once thick, waist length hair is gone and my face is unrecognizable to me. I just try to concentrate on the fact that I feel better and it doesn't really matter what I look like at 56, not really. I mean, I would have done ANYTHING to feel better, so..

Also, now that everyone but me is staring down into their rectangles like the end all be all answers to life is on that screen (I still have a flip phone so no screen for me), no one is looking at us anyway..not even kidding, I work at a hospital and am convinced I could walk naked down the hallway and no one would even notice. Employees and visitors alike. Sad.

[Thelmarina in reply to sidra1968]

Do try it and see what happens … 😂

[Lenore58 in reply to Thelmarina]

😂😂😂

[Koalajane in reply to Gladys911]

Just be aware carbs turn to sugar!

[PMRpro Ambassador]

It might - but it might not unless you take some action. Everyone is different.

I gained weight with inactivity and comfort eating with undiagnosed PMR over a period of 5 years. When I started pred I didn't gain more - it moved to the usual places, a bit on face but a lot around my midriff and back of the neck. When I was put on methyl prednisolone (because I moved to Italy where prednisolone wasn't used) I gained a lot of weight, After about 6 months I was switched to prednisone, moving from 20mg methyl pred that didn't really work to 15mg prednisone that did. Only 2 months later some of the midriff fat was slowly melting away (the spare black trousers for my daughter's wedding fell down ...) - I started a low carb diet and over the following 18 months I lost 35lbs of PMR and steroid-related weight. Which has stayed stable even at relatively high doses of prednisone - a lot of the time at 12-17mg. Since I started Actemra and got down to 7mg pred I have lost about 4kg - long way to go but I will have to get the head around lower carbs than I am at present which is maintaining my weight but not allowing for weight loss.

[PMRpro Ambassador in reply to PMRpro]

And the low carb route has the benefit of aiming for the fat deposits and using them up.

[Gladys911 in reply to PMRpro]

Again many thanks for everybody's experience and advice - I suspect that, like many on this forum, I was initially in shock from the diagnosis, adapted to the challenges which gradually became "normal". Now, seeing light at the end of the tunnel, things that didn't bother me when there were bigger issues to deal with are coming to the surface, especially as I have a major family event later this year. I will look at the low carb diet however.

[Rubha in reply to Gladys911]

Low carb has helped me …..not very low carb as that can have other issues . I am a vegetarian so low carb had more challenges but I found help with various recipe books. I still eat some carbs and enjoy a night out but have minimised the serious over the top carbs.

[emersee in reply to Rubha]

Hello Rubha. Could you please post the names of any of those recipe books you used as this sounds like a pathway I need to take. Thank you.

[PMRpro Ambassador in reply to emersee]

Use google - you will get loads of suitable recipes, free.

[Rubha in reply to emersee]

I sent a reply using my phone with a pic of Rose Elliot’s Low Carb Recipes for vegetarians. Not sure if you got it.

[emersee in reply to Rubha]

I didn't get the picture, but that's ok as I have the name of the book now. Many thanks 🙂

[Rubha in reply to Rubha]

Rose has 3 levels of low carb ……I started the most severe level for 2 weeks (though I cheated a wee bit on a couple of times) I am now gradually introducing some carbs but intend to steer well clear of the biggies …..bread , rice, potatoes etc. Good Luck.

[Lenore58 in reply to PMRpro]

PMRpro, when you say “low carb,” is it as low as Keto? Meaning no “starchy food” at all? No grains, bread, potatoes, sweet potatoes? And almost no fruit? (Small amounts of berries) Or not quite that low? I eat low-carb…if I stick to strict keto, I lose a few. The minute I “cheat” with a tortilla or a piece of bread, one or 2 pounds come back overnight! 😵‍💫 I’m having trouble getting an extra 10 lbs. off.

[PMRpro Ambassador in reply to Lenore58]

Snazzy and I had to get as low as keto to lose weight, I found maintenance easier. But I didn't eat grains, bread, spuds, little fruit, One of the problems with being that low carb is that when you do try to cheat, the carbs tend to encourage fluid retention too - that is where the instant weight gain comes from.

[Lenore58 in reply to PMRpro]

That's what I thought! To gain that instantly must be some water weight!

[Alliekat65]

Hi I am on 25mg and have just had 2 weeks holiday and I HATED the pics of me especially my face. BUT we were inbthe lake district and I was just so pleased that my GCA had been caught and that I could see the view.on a low carb diet I actually lost 8lb so am.pretty happy. but im most happy I still have vision

[DorsetLady PMRGCAuk volunteer in reply to Alliekat65]

True, your face will return to normal, eye sight loss will not.

Those of us with GCA may appreciate that more. 😊

[Loyd]

Hi Gladys - happy to share my experience. I’m a 73 year old woman. I was put up to 30mg pred to control a really bad flair 3 years ago and got the worst moon face - so bad!! I also had slowly put on weight (over 80 kilos and size 18). I put myself on a severe low carb diet almost no carb. Like you I like my wine so that didn’t change! Now two years later I’m down to 2/3 mg and down to 60 kilos size 12 - moon face gone. No additional excercise as have severe arthritis in my ankles and can hardly walk. Anyway just to let you know there can be light at the other end of the tunnel. Best of luck.

[Gladys911 in reply to Loyd]

Many thanks Loyd - most encouraging! x

[RosyPollyandMe in reply to Loyd]

Thank you for sharing your story. I found it helpfully encouraging.

[Daffodilia]

My moon face didn’t last long - it is distressing - hope yours goes soon

[Marley12b]

I finally came off of Pred in September last year and had terrible moon face but it’s all back to normal now. My husband always said “at least you can see your fat face” not very nice but he was right because without Pred I could be blind. A temporary thing but it will improve.

[Potter100]

Hi, I am now on 6mg pred a day & tapering 1mg a month, so some time yet before zero hopefully. I too hate my fat face with a firm double chin. I also have the extra weight round my middle, & thinning hair. It is all really depressing. I am clinging to the fact that all will be resolved once I come off the meds. Just praying that no flare ups mean extra meds, thus slowing the process. I am truly grateful that the prednisolone stopped the awful pains in my arms which were debilitating, but even at 74 I like to think I can still be attractive, which is far from what I feel & look now. I hope you regain your youthful looks etc. when you come off meds. Good luck.

[Gimme]

I'm only a few pounds heavier than when I started, but my bottom appears to have migrated round the corner to my belly.

[Stella3]

Hi Gladys I did not get the moonface but gained quite a bit of weight. It all began to go after I lowered my dose of prednisone to about 4mg and then below that. All my clothes became loose as I had not realized how much weight I had gained. I am sure yours will do the same. Good luck.

[Italybound62]

I seem to remember the moonface disappeared after getting to 5mg and below.

[Booch]

mine did around 5 mg. I gained 12lbs and have lost it. Now at 1.25 mg. Moonface went away. I’m keeping pic of it on my license so I can be forever grateful I’m better!!